Achievements By LSDSS in Last 3 Years

Despite such hurdles LSDSS have been able to get ERT for about 188 children in India out of 500 identified by us across India. Out of 188 children, 163 are getting free thru International Charitable Access Program of 2 US based major Pharmaceuticals (Sanofi and Shire) who manufacture these drugs. 6 more FREE approvals for ERT from another major pharmaceutical - Pfizer which are under process. 1 child is getting from ESI since January. 10 children are getting through ESI reimbursement after we moved to Delhi High Court in 2015 onwards AS ESI HAD REFUSED TO ENROLL MORE PATIENTS DUE TO HIGH COST. 14 children are getting reimbursement through Public Sector undertakings, Armed Forces and 1 through Maharashtra Police.

We moved Karnataka Government through State High Court to get treatment for 45 state children in 2015 which court ruled in our favour. After long drawn battle in court the state Government had to obey court orders 7 transferred initially Rs.10 Crores out of Rs. 28 Crores projected by Government Hospital at Bangalore in December, 2016 which will benefit 25 most eligible children to start with.

Similarly High courts of Telengana and Kerela granted favourable orders for 2 & 1 each.

Most important achievement which is the need of hour for us is last month DECEMBER 2016 Delhi High Court given 6 months time line to Central Government to make the policy & funds provisions for such & other Rare Diseases.

Lastly also another milestone for LSDSS has been that one of our patient's parent Abhishek Jain raised Rs. 1.15 crores in October 2016 through Crowd Funding for Bone Marrow Transplantation for his six year old daughter in Netherlands for one year. Funds directly paid to hospital by the Agency. (Family has already gone in November 2016).



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